I wanted to let any followers know that after a long, difficult two year battle and more pain and suffering than any one person should ever endure, my beautiful only daughter, Abra Elaina Hall, died in my arms at 4:53 AM on July 3, 2014.
They say the hard part is over, but right now, it sure doesn't feel that way.
Abra is survived by myself and her brother, Colin, and her step-siblings, Austin, Annie and Gracie. Also, Abra's awesome stepmother, Mary and Mary's husband Peter, my incredible friend, Roby, and my partner, Tommy. People who were all with me during the final days and moments of Abra's life.
Abra wanted to be cremated. I am trying to plan a Celebration of Life for her on what would have been her 28th birthday, August 11, 2014. One of her friends has set up another GoFundMe page to assist with Abra's final expenses . . . because
I still have paid only a small portion of the debt I incurred taking her to The Burzynski Clinic for a useless treatment, which was the reason for this page. And while that was a huge mistake, at least I have the peace of mind of knowing I did everything in my power to save her and keep her with us for as long as she was able to stay.
I knew my daughter was special, but had no idea how very loved and admired she was. They are expecting a huge crowd for her memorial and her wonderful, loving friends are right now securing a venue large enough.
I just came back to work today. Not sure how that's going to be, but they need me here and gave me so much time off while she was alive - when it mattered - that I feel obligated to at least try.
I want to thank all who have continued to offer their love, concern and support, and for those who are still trying to stop Dr. Stanislaw Burzynski from doing to anyone else what he did to us.
Thanks for everything.
Abra's other GoFundMe page can be found here:
CONTINUED STORY ~~~~~~~~~~~~
Once Abra had been home a few weeks, her condition seemed to stabilize and, for the most part, she did well . . . or as well as can be expected for someone in her condition. What I was finding was that it was so much work for me, there is no way I could continue to do it long term. Her paid caregiver was only allowed a certain number of hours per month, I didn't want to take advantage of the kindness and generosity of my best friend by expecting her to be there too often, Abra's brother had to go back to work and her step mother, the few times I asked, was not available. This left me to do the majority of the care by myself, and it was round-the-clock. No weekends off. No holidays. And I had to arrange for help if I wanted to do anything for myself or with my partner outside the home.
The six weeks came and went and, thank God, Abra's condition has continued to remain stable. I now was faced with returning to work full-time. My employer has been above and beyond supportive of me throughout this ordeal that began with Abra's diagnosis back in August of 2012. I absolutely HAD to get back to full-time work and hospice doesn't provide enough support at home to enable me to do this. Sadly, there was only one option. Abra would have to go to the SNF I had originally intended to keep her out of.
This was the hardest decision of my life, and it was met with much resistance on Abra's part (and understandably so). However, I saw no other option. Whatever the alternative, the most important thing was to have her somewhere where she would be safe and attended by a person or people who were capable of meeting her many needs at all times.
Abra is now on her tenth day in the SNF and she is not happy there. I feel extremely guilty and sad about this choice I had to make. My goal is to decorate her space even better than home so she feels comfortable. There are definite pluses to being there over being home. For instance, Abra LOVES visitors and can now have them whenever she feels up to it. This was NOT the case in my home. In fact, it was the source of a lot of tension between us. She can even have to occasional overnight guest. Someone has donated a futon to Abra and as soon as I can arrange to have it moved for her, she'll have a place for her frequent friends to sit, or even crash, when they come to visit.
Apparently, the food is very bad. I've heard this confirmed by every single resident that I've spoken to. In fact, it's kind of a joke among residents. I'm looking into a mini fridge and a microwave so I can stock her room with soups, noodles and other canned and packaged foods that she can fix herself. Plus, we can put some fresh stuff and/or leftovers in a mini fridge. We just need the funds to do so.
The SNF takes residents on outings and field trips but you need and electric wheelchair to participate. Since Abra is on hospice, the insurance will not buy her an electric wheelchair. We found one in fairly decent condition for $150 that needs new batteries and a charging cord I found on EBay for $19.99 plus shipping costs. You have to replace two batteries when they go dead. I found a deal online for two online for $149, which this includes the shipping. Once we get these installed, Abra will be able to go out on nice days and buzz around town. I think it will make her feel good to get out of the place when she wants to.
As far as Abra's continued health status, we just don't know. Swedish doctors said this will be a "day to day" experience and that she could experience anything from a sudden rupture of the tumor blood supply causing a brain bleed that would result in a coma; to a slow shut down of the major organs.
I spent the day with Abra yesterday for Mother's Day and noticed that she has severe edema in her feet and lower legs. She was also having issues with pain because she was refusing her pain meds saying they made her nauseous. This is because the SNF staff had her on the wrong meds. I think I got the medication issues straightened out with the nursing supervisor today.
I ask that you all just keep praying for a miracle recovery and/or no suffering and that Abra adjusts well to her new living situation and is happy with it.
If you feel comfortable doing so, please share this page on Facebook and get the word out.
Thanks for caring and taking the time to follow up on her story.
So much has happened since the last update:
Abra began experiencing difficulty walking and was falling frequently by late January. She was also having leg tremors and pain and low back pain, in addition to some other problems. Her appointment with the Ivy Brain Tumor Center at Swedish in Seattle was rescheduled to a sooner date, as they were very concerned about the rapid change in Abra's condition. The day before the appointment she fell and hit her head so hard she had to go to the ER for stiches. When we arrived at the appointment, Abra began experiencing a sort of panic attack and was unable to participate in her MRI (which would have taken over three hours). She was in severe distress and ended up being admitted to the hospital then and there. They later did the MRI under anesthesia. The results that came back were devastating.
Basically, the doctors said that the Leptomenengial Carcinomatosis had progressed at an unbelievably rapid pace and her spine was covered in inoperable tumors that were compressing the spinal cord. This explained the leg and back pain, twitching, falling and other problems. Apparently, the tumor in the brain itself was growing again as well. Sadly, the doctors and social workers pulled together to meet with us and told us there is nothing more they can do medically to help Abra and it was time for hospice. The prediction for her life expectancy was 1 to 6 weeks as of March 8, 2014.
The Swedish team began making arrangements on their end right away, but told me it would take several days. All in all, Abra was in the hospital in Seattle for about 10 days. In the meantime, I had a few days to decide where Abra was to go from Swedish. Would we send her to a skilled nursing facility (SNF), or try to care for her at home? Initially, all my family and friends suggested a SNF. Although I was in shock and experiencing grief, I had to make the best decision for Abra. I sought answers everywhere I could. I did internet research. The Swedish social worker gave me a very small list of SNFs in our area. Several of these were crossed off by me immediately due to their horrible reputations. A few of them I called said they had no openings, or they actually did not take hospice patients. This left two to choose from. One was full and my partner and I toured the only choice we felt was available.
After the SNF "tour," I left in tears. I didn't feel it was appropriate for a young girl (especially MY daughter) to spend the last weeks of her life in a place like that. Suddenly, a SNF didn't seem like an option and I had to switch gears and see if it was possible to muster the resources to do hospice at home, which I knew nothing about. I called Swedish to let them know I had changed my mind and wanted to bring Abra home, not having any idea what was involved. The Swedish staff quickly made the arrangements for home hospice. I had commitments from Abra's friend and paid caregiver, my best friend, and Abra's stepmother (an RN who lived north of Tacoma) to assist me in caring for Abra at home. Abra's brother also took six weeks of unpaid leave of absence from his work to help us out.
By now, Abra was unable to walk at all. She had (semi) walked into the hospital on February 27th (we had to bring a wheelchair because of the falls and because she couldn't walk long distances without help) and she was paraplegic by the time she was sent home on March 8th. For anyone who hasn't experience hospice, it was all a learning experience for us all. As it turned out, Abra's stepmother really wasn't able to help. She lives a 90 minute commute one way from us AND she has 9 children and commutes to Seattle for work. God bless her for offering, but the commitment was too much for her with what she already had on her plate.
Once we got Abra home, it became apparent that taking care of a paraplegic is so much more daunting than could ever be imagined. And home hospice doesn't provide nearly the support that is needed to care for a loved one in the condition Abra was in. They don't provide any kind of nursing care at all, except for the twice weekly visits of the Hospice Nurse following the case, where about 30 minutes is spent talking about how things are going. Hospice provides a bathing aide a few times a week, a social worker (who I saw 2 or 3 times in 2 months), a chaplain, prescription medications, supplies and equipment (like a hospital bed, commode, oxygen tank, and eventually, a Hoyer lift). That's it. The Hoyer lift allows one person to move her from place to place, but it is large, awkward and cumbersome. And it takes time so if someone has to go to the bathroom quickly, for instance, forget it.
IF Abra were able to walk and do some things for herself, it would be totally different. However, that was not the case, and it was easy to see once we started actually doing it. Transferring her from bed to wheelchair, wheelchair to commode to chair, etc. was impossible for one person to do. The first few days she was home, her caregiver and I had to set her down on the floor rather quickly, rather than drop her, because it was apparent that the transfer was not going to be successful. I even had to call 911 once to come pick her up off the floor. Once we got the Hoyer, it enable one person to care for her alone, but it was very time consuming.
STORY TO BE CONTINUED~~~~~~~~~~~~~~~~
Mom and Abra - April 2014
Hi guys. Thanks for your support. Please spread the word any help is appreciated as things are starting to roll in. Thank you for any help you can provide.
I don't even know where to begin. Last Friday we got the worst news possible. It seems that Abra is experiencing a very rare complication of her cancer. She has been diagnosed with leoptmenegial carcinomatosis. The tumor activity has spread to the lining of her brain and her spinal cord. Her doctors are trying to treat the condition with a combination of Temodar and intravenous Avastin, but the prognosis is quite scary.
What led up to this was yet another hospitalization. On Friday, December 13th, Abra had another seizure. This was the worst one yet. After she was stabilized, she was transferred to Swedish Hospital in Seattle. At first, the physicians continued to insist that the seizures were Abra's psychological response to overwhelming stress by claiming that she was experiencing what they call a "conversion disorder." Basically, this is their professional (and I use the term loosely) way of saying these intense seizures, headache pain and vomiting were all psychosomatic. I knew this was not the case. Her neurologist in Seattle even had the nerve to tell us that Abra needed to see a psychiatrist when we got home if we wanted to see a resolution to the problems. Mind you, her memory has been so severely affected that at times, she didn't even recognize ME when I went into her room. Or you could sit and visit with her for an hour, leave the room for five minutes, and when you came back she didn't even remember you had been there. She has been told about her condition, but can't remember what she has been told. Maybe this is a blessing. It's pretty laughable that these doctor's would have suggested that our only option would be talking to a mental health professional!
A spinal MRI and a spinal tap were finally ordered last week and the results confirmed this horrendous diagnosis. It explains all of the symptoms Abra has been going through for the last six weeks - intractable headaches, back pain, seizures, vomiting, dizziness, etc.
According to the information I can find, there is not a lot that can be done. Her oncologist refuses to give a prognosis (life expectancy) at this point. He says he might feel more comfortable doing so after treating her with the chemo drugs and reassessing her in about 4 weeks when they do another brain scan.
I am asking that you pray for my daughter. Pray for a miracle to heal her. Thank you to everyone for your continued support.
Abra has been hospitalized twice since my last update. She is having the same medical issues. She spent last week, including Thanksgiving at Swedish Hospital undergoing testing for possible seizure activity. She is home now and doing pretty well, but she can not be left alone. I am back to work again, overwhelmingly behind, and afraid of losing my job. I am currently trying to get help form the state for someone who can come in and stay with Abra to make sure she is safe so I can continue to work. If not, we lose our only source of income and our health benefits, making a situation that one wouldn't think could get worse, just about as bad as it can get. I'm hanging by a thread, but at least I'm still hanging. Sorry for not posting more details about Abra. I will try to do this when I have more time. Thanks for everyone's support.
I received a call from Liz Szabo at USA Today. A story about the Burzynski Clinic, featuring Abra, will be in tomorrow's issue. In order to protect others from being taken advantage of in the way we were, Abra and I are trying to help get the word out about why people should NEVER give their money to the Burzynski Clinic. I will try to post a link as soon as possible.
Thanks again to our supporters!
November 14, 2013: Abra was just released from another hospital stay about 90 minutes ago. I noticed that she basically slept around the clock over the weekend and was worried, so I asked her caregiver to keep an eye on her for me. The last time that happened, she ended up in the hospital for a week with a life-threatening lung infection. She spent the night at a friend's on Monday and wasn't home when I left for work on Tuesday. Her caregiver later called me and said the friend she'd stayed with had been up with her all night because she was complaining of an agonizing headache, was vomiting and was disoriented to the point of not knowing where she was. I instructed her to meet me at the emergency room with Abra. At the ER things only got worse. Abra was delusional and we could not get her to wake up. She was finally admitted for observation and testing around 6:00 pm that evening. A CAT scan and all of her lab work results were normal (or as normal as they can be for someone with a Stage III brain tumor) and she finally started "coming to" yesterday. Doctors ruled out the possibility that the issue was caused by the tumor and have said they assume the problem was an issue of too much medication and not enough sleep. She has had sleep issues since adolescence and the illness has only exacerbated the problem.
Thanks to all of our supporters out there!
On Monday, November 4th, 2013, we took Abra to Seattle for her three month check-up. Dr. Henson initially saw a little more shrinkage in the tumor, but when he did a physical exam, he noticed she had less peripheral vision in her left (only) seeing eye. He went back to the MRI to take closer look with two other providers and they found something else near the tumor. He says it might be a cyst. He just does not know. It could be a new tumor as AA or Stage III brain tumors are known to be highly aggressive. Abra had to travel back to Seattle that Friday (November 8th) for another "emergency" MRI to get a closer look at this area of concern. They will do another MRI in Seattle in six weeks and compare it to the baseline done on November 8th. If the cyst theory is confirmed, they want to put her back on steroids. Unfortunately, this drug is what caused Abra to develop Cushing's Syndrome, which she is still recovering from. If the steroids don't work on the cyst, the doctors say they may have to perform another craniotomy and try to drain the cyst with a needle. At that time, I assume they would do another biopsy, if the mass turned out to be a tumor in order to determine if there is a progression of the cancer to Stage IV. If the mass is a tumor or progression of disease, we didn't discuss alternatives. I don't think we were ready to consider that possibility anyway. Please continue to pray for Abra's healing and recovery.
Thanks to all who visit here, those who have donated and all of you who offer love, support and prayers. We appreciate each and every one of you.
Abra was recently diagnosed with a painful and difficult to treat condition called Neovascular Glaucoma in her right eye. The first concern is to prevent the blindness it can cause. Because Abra is already blind in this eye, they are attempting to reduce the pressure caused by fluid trapped in the eyeball. She underwent surgery a little over a week ago to have tiny holes lasered into her iris in an attempt to alleviate the pressure build up inside her eye. Her follow-up this week will tell us if the surgery was successful.
I've recently been in contact with USA Today and there will be a story coming out soon about the controversy surrounding the practices of The Burzynski Clinic, where Abra was a patient last summer. Abra's case will be among those featured in the article. When it hits newsstands, I will post a link.
Yesterday was not a good day. It was time for Abra's three-month MRI and checkup in Seattle. Her oncologist noticed slight shrinkage in the tumor on the MRI again, but while examining her he discovered that she had lost some of the peripheral vision in her left eye (the only seeing eye she has). Upon re-evaluation of her MRI, he saw what he believes might be a cyst near the tumor. She has to go back in this week for a special MRI that will focus on this area. The way they would treat a cyst would be to use steroids, even though that could cause a relapse of the Cushing's Disease she is still recovering from. If steroids didn't work, they'd have to do another craniotomy and try to drain the cyst with a needle.
She is going Friday for this special MRI and if they still think what they see on the MRI is a cyst, they will treat her for six weeks with steroids then do another of the same MRI's to try and determine if the steroids worked or not. The doctor wouldn't deny the possibility that this is another tumor. I have no idea what they'll do in that case.
All I can ask is that you keep Abra in your thoughts and prayers.
Update: August 29, 2013
Since we still owe for expenses incurred while at The Burzynski Cynic in Houston, we are still trying to raise money to repay loans and for other cancer related expenses. At the time, Abra's condition required immediate action. We could not wait for funds to be raised and I obtained some loans to get us down there right away.
Unfortunately, The Bruzynski Clinic's antineoplastin treatment failed. While there, Abra began to develop Cushing's disease because of the high dose steroids she was taking for brain inflammation. The Cushing's was not recognized or diagnosed by Burzynski or his staff. She also developed a chronic infection in the IV port that was placed in her chest while being treated by Burzynski. This eventually turned into sepsis, which required a weeks' hospitalization, which then turned into a deadly lung infection and almost killed her about a month later. It was a long journey, which I will try to explain in more detail, time allowing.
We returned home from Texas at the end of September 2012 and by early November, it was clear that she could not tolerate the side effects of Burzynski's treatment, along with all of the other problems that resulted from the visit there. Abra started six weeks of daily radiation treatment, with concurrent Temodar (chemotherapy) in December 2012 and ending in January 2013.
After this, a 6-month regimen of Temodar has been continued 5 days out of each month. Abra is on month five of this treatment, which makes her weak, lethargic and nauseous. An MRI in February 2013 showed a slight decrease in the size of her tumor. Good news! Her last visit to her doctor (at The Ivy Brain Tumor Center at Swedish Hospital in Seattle) on August 5, 2013 indicated an apparent shrinkage in the tumor of at least 50%. This was fantastic news!
In short, Abra is currently responding favorably to treatment. We believe this is a direct result of her treatment by her oncology teams in Centralia and Seattle and the love, prayers and support of friends and family. Due to the nature of an inoperable Anaplastic Astrocytoma, Abra will continue to see her oncologist in Centralia monthly, will visit her specialists in Seattle, and must have an MRI of the brain every three months.
Please keep praying that Abra's tumor will continue to shrink, or at least remain stable for as long as possible. I will try to do more regular updates than I have been, or add a little more detail to what has gone on for the last 10 months as time allows.
We thank everyone for their generosity and support during what has been a very difficult time for Abra and the family. Continued donations will go directly towards medical bills and other cancer related expenses for Abra, and for paying back loans obtained to make the trip to Houston. Your help is deeply appreciated.
If you have questions for me, feel free to email me directly at:
Waiting on my next MRI to be scheduled, should find that out on Tuesday when I see my doctor. Got off steroids, vision was screwed, so now I am back on them. Woe is me, lol.
Just did a radio interview with Live 95! Pretty sweet. Gettin' the word out about upcoming benefits and just a short bit of questioning but still pretty cool. :) Please share and donate if possible, thank you everyone!
So, the final word from the Burzynski clinic stated a growth of 33% in the tumor from my last MRI. I will be resuming my IV treatments (I've been off for a few days trying to reduce swelling) on Sunday and playing the waiting game until my next MRI. Until then, thank you for your continued support and please share this link and donate if you can! <3
Hi everyone. Hopefully will be getting the actual percentages and full info on my tumor tomorrow. Had a very hard and painful day today. Hopefully tomorrow will be better. Please share this link, and donate if you can. Thank you <3
Tentative MRI results...tumor growth of 30-40% waiting on one last result from September 24 to come through for comparison for the official report. No good.
Still waiting on MRI results....not happy at all that they are dragging their feet. What if they were in my shoes? I'm sure they would have had the answers for themselves already. Frustrated and angry.
Quick update: echocardiogram results were normal. SHOULD get my MRI results by tomorrow. Crossing fingers. Thank you all for your continued support. We will be making a payment with the current funds to the Burzynski clinic within the next day or so I believe, so do not be alarmed if you check the page and see that there is nothing on here lol.
Thank you very much for your recent donations! I have an MRI tomorrow that I am pretty nervous about. Hopefully seeing the doctor to try and get to the bottom of this miserable swelling I've been going through as well. Crossing fingers that my tumor hasn't grown any since my last MRI. :(
Had an echocardiogram yesterday. Waiting on results from that to see if it is possibly my heart causing the water retention issues. Lost 7 lbs yesterday only to gain most of it back. It's getting extremely frustrating to say in the least. Been doing a juice diet, eating a little on the side but trying to stick to juice only. Today is also hopefully my last day smoking. Trying to get healthier so I can really fight this. Thank you all for your support guys. <3
Thank you everyone for your recent donations! We have had some great fundraisers that have come up. We have made approximately $3,200 in donations at the last two events that have been held for me. This is GREAT. We are SUPER close to reaching a whole month's payment. I want to try and push this page a little and get to that extra $2,000 or so we need. Please SHARE this page wherever you can, and donate if and when you can! Thank you so much again for all your help and support!
Life. Things have been so hectic. Awesome.Depressing. Amazing. Uplifting. The lowest and highest I've ever felt. I can't even believe where I am right now...but I wouldn't have it any other way. The worst possible thing I could possibly imagine happening to me in my life has happened, and yet every single day I feel like I am growing and learning so much and appreciating so much more around me. Getting cancer has probably been the best thing that has ever happened to me. It has opened my eyes and I really feel like it has been slowly making me a better person. I never realized just how many people really truly love and care about me, and I wish there were a way I could express in words how much you guys mean to me. Each and every one of you. Thank you so much, I really feel that I will beat this, and it's really all because of you.
Thank you for your recent donations! I have been feeling s bit under the weather lately. I have been slowly upping my med intake and it has been making me extremely tired and irritable. A close friend of mine did some cool stuff to my hair, my mom got me my nails done, got hooked up with a tattoo...so that's pretty cool. :) It's nce and uplifting to do things you enjoy or things that make you feel nice. I am just trying to take the days as they come and enjoy them as much as possible.
Just a small update, we are having more problems with swelling again and this is on a half dose from what I was on while in the clinic being supervised. This is not a good sign. This could mean cessation of treatment but that will be a VERY last resort but the idea of this happening is very scary. My next MRI to check the status of my tumor is in November. As long as it has not grown by more than 50% they consider the treatments to be successful thus far and I will continue as far as I know. Fingers crossed and I will keep people posted.
We hit 3,000 this weekend! Thank you everyone! We are almost halfway to one month's treatment! I am just stunned. Let's keep the word going and see how far we can go. I appreciate all the support and words of encouragement, it means a lot!
There are some negative comments and other things being posted on here from people, for whatever reason I do not know. If you research Burzynski on google, you will find countless stories of his successes.......and also many of his failures. I need to point out for those doubting and apparently accusing me of trying to "lie" or "scam" anyone that not only has my family done YEARS of research regarding this doctor..but that we also know people PERSONALLY that have been CURED by this doctor when NOTHING else worked or they were sent home to DIE. There is a movie on Netflix that I would encourage any and all of you to please look into called "Burzynski". Anyway, since the comments keep coming and I am going to be almost to the point of being harrassed now it seems, I will be having to keep a better eye on this page. It's pretty fun to come here to see what kind of positive things I have to look forward to today and end up in tears because someone could be so thoughtless.
Anyway, thank you for the continued support from those of you who have. Those of you who truly know me, know that what I am doing is right. I love you guys. Thank you.
Cool, now that I know I can update from this, I will start trying to do so! THANK YOU to everyone. I have been trying to make sure I personally thank all of you via an e-mail message on here, but I just wanted to let everyone know how much I appreciate all the help and words of encouragement thus far! Almost halfway to my first month's treatment payment! THANK YOU THANK YOU THANK YOU EVERYONE <3